By Asbury Park Press Reporter Carol Gorgo Williams --
Back in 1997, Bobbie and Billy Gallagher of Brick knew there was something different with their young daughter Alanna, and when she was three, they had the diagnosis: autism.

When their son Austin was 16 months, they knew the same was true for him.

And then they started realizing how many other kids in their community and elsewhere were being diagnosed with autism. Armed with a spreadsheet, the housewife and her fisherman husband marched into Rep. Chris Smith’s office in Whiting, convinced they had pieced together something incontrovertible: Proof of escalating autism rates in their community and elsewhere.

“We were all looking for some answers,” Bobbie Gallagher said.

The Gallaghers’ research was recalled Tuesday by Smith, R-N.J., during a news conference on the eve of World Autism Awareness Day, which was held jointly by Smith, co-chair of the House Autism Caucus, and Autism New Jersey. In 1980, Smith recalled, the prevalence rate of childhood autism was three out of every 10,000. Now, it is one out of every 68.

And in New Jersey, one out of every 45 children has Autism Spectrum Disorder, the highest rate in the country, according to the Centers for Disease Control and Prevention.

“Without the numbers, we don’t know what we need,” said Smith, who saluted the couple for bringing the spreading crisis to his attention in 1997. “We owe you for that fact. This is one of those times when ‘thank you’ doesn’t seem to be enough.”

The research compiled by the Gallaghers helped lead to the enactment of Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act of 2000, which created the first comprehensive federal program to combat autism.

Smith is seeking additional funding for the Combating Autism Reauthorization Act. In 2011, the act provided $22 million for the Developmental Disabilities Surveillance and Research Program; $48 million for autism education, early detection and intervention and $161 million for hundreds of research grants at the National Institutes of Health and for the Interagency Autism Coordinating Committee. The 2011 act was itself a reauthorization of the 2005 measure with the same name.

Additional funding is needed “not just for children and adults with autism but for their families who are in great need of respite care,” Smith said.

“I don’t think that will be a problem,” said Smith of renewing the funding. “This is a global pandemic” affecting the U.S., the European Union and Asia.

The new statistics, made public last week, were culled from data collected in 2010 from 11 monitoring sites in New Jersey, Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, North Carolina, Utah and Wisconsin.

To put the numbers is perspective, if all the people in New Jersey with autism comprised the population of one city, it would be the state’s third largest, behind Newark and Jersey City, said Jim Paone, who has a child with autism and who is a board member of Autism New Jersey

Smith said he recently was in Japan, where autism is a “huge problem,” and Nigeria, where children receive virtually no treatment. Peru “has a huge problem with autism. Around the world, it is in almost every region,” Smith said.

During the news conference, which was held at SEARCH Day Program in Ocean Township, Smith spoke of how he worked with the Gallaghers that first day for more than two hours.

By the time the Gallaghers left that night, they had made a convert. “My God, we have a problem,” Smith said he recalled after the first multi-agency meeting in Brick where not even the CDC appeared to be familiar with the research being done in other countries. But the Brick parents were.

Suzanne Buchanan, executive director of Autism New Jersey, noted that her group will commemorate its 50th anniversary next year. But that is not a happy occasion. “The need for our services is greater than ever,” she said. April is National Autism Awareness Month.

The Gallaghers now are moving into helping adults with autism as they age out of many available services.

“We are trying to bright the gap between what we know and what we need,” said Simone Tellini, director of program development at POAC or Parents of Autistic Children, based in Brick.

This article was originally printed on April 3, 2014 and published at:
 http://www.app.com/article/20140401/NJNEWS15/304010044/world-autism-day-nj